What kind of words should we use to talk about intellectual disability? Cognitive impairment, differently-abled, handicapped, special needs?

While the language that we use to describe disability matters, acceptable terminology depends on the decade and whom you ask. Varying preferences for person-first or identity-first language demonstrate that even within the disability community, there is no consensus on which terms are most appropriate. And what does having a disability even mean? Is it part of your identity and something to be proud of? Is it created by the environment around you or is it an inherent trait? Do you celebrate your disability or is it a medical condition to be fixed?

Given these disparate perspectives, here’s some sage advice: “When in doubt, call a person with a disability by their name.”

On the other hand, most people agree that disability varies throughout life and is affected by external elements like access to education, assistive technologies, and employment opportunities. People with disabilities also share some common challenges. In the United States, people with disabilities are much more likely to live in poverty and to encounter food insecurity than people without disabilities.

Having a disability can affect how you access food, how you cook, and whether and what you eat. People with disabilities may experience food aversion, sensory-based avoidance of food, or mealtime anxiety. They may depend on others to shop for or prepare their food, or they may have dietary restrictions that limit the variety of foods available to them.

When my brother Sam was a young child, he ate exactly three foods: Eggo cinnamon toast waffles, scrambled eggs, and grilled cheese. As he transitioned from half-day to full-day kindergarten, my mom puzzled over which of the three she could pack in his lunchbox. Thankfully, the day before school started, he requested his very first PB&J sandwich.

Sam’s diet remained extremely limited for the next decade. Nightly family dinners were sometimes stressful, and planning around his diet influenced the restaurants we frequented and how we traveled. We kept drinking straws in our car in case restaurants didn't have them, and my mom felt remorseful that he didn't enjoy his own birthday cake. My parents didn't want to force Sam to eat, but they also worried about his nutrition. He rejected foods that were too crunchy, too wet, too hot, too gooey, or too spicy. We dutifully filled his dinner plate every night, and more often than not, he threw his food across the table or on the floor. For years, our daily mantra was, "Leave your food on your plate!"

Expanding Sam’s diet required years of patience from everyone involved, but cooking and eating are now some of his favorite activities. He volunteers to cook school lunches, participates in a community kitchen, and enjoys choosing his own food at restaurants. He loves family road trips in part because he gets to try new foods.

We were all very surprised when Sam ordered braai lamb with apricots, pap, spinach, cashews, and goat cheese from Sanaa in Disney's Animal Kingdom.

Sam enjoyed Thanksgiving turducken at Bourbon House in New Orleans.

Mac 'n' cheese at Gadsby's Tavern in Alexandria, Virginia.

No gravy is not an option!

A few months ago, he jokingly ordered “passwordfish” at a Japanese restaurant, and I’m amazed that fifteen years ago, my family requested a grilled cheese delivery from Disney World’s disability services so that we could eat at Epcot’s Teppan Edo restaurant.

Sam’s relationship with food highlights how learning to enjoy cooking and eating can enhance autonomy and self-determination in people with disabilities, and this experience prompted me to create Your Special Chef. I conceived of the site in 2008 as a sophomore in high school. I photographed the cooking process with a digital camera because I didn’t have a cellphone, let alone a smartphone, and first-generation iPads wouldn’t be released for another two years. I imagined that teachers would access the site on a desktop computer and print recipes to use in the classroom. I certainly didn’t imagine that ten years later, Your Special Chef would still exist, that I would still be in school (twenty years straight and counting!), or that students would be accessing the recipes themselves on tablets and smartphones.

Over the last ten years, the language that we use to describe intellectual disability has also evolved. I named Your Special Chef in reference to phrases like special needs, Special Olympics, and special education, reflecting my position that people with disabilities are unique and valuable. However, I’ve received feedback that some teachers don’t allow their students to access the site directly because the name implies that they have special needs.

Recent advocacy efforts have focused on emphasizing that people with disabilities have human needs, like security, education, acceptance, and love. Some people believe that the term “special needs” can promote “othering” or “exceptionalizing,” meaning that people with disabilities are further excluded or marginalized. Instead of regretting my lack of prescience, I’ve decided to change the name of Your Special Chef to something that I feel expresses our ongoing goal to make cooking accessible to everyone, regardless of ability. I hope that renaming the site will remove an unnecessary barrier by allowing people with disabilities to access the recipes directly. However, our continuing aim to provide visual recipes and other resources to teach cooking skills to people with disabilities remains unchanged. Welcome to Accessible Chef!

]]>Sun, 28 Feb 2016 06:05:53 GMThttp://www.accessiblechef.com/blog/exciting-update-the-recipe-creator-is-readyMany of you have been contacting me to ask when the recipe creator will be finished. I'm very excited to announce that a basic version of the recipe creator is now ready! You can access it at http://jakeonaut.github.io/yourspecialchef/. It does have some bugs, so please use the internet browser Chrome and only upload small images that are less than 1000 pixels wide. If you encounter any problems, please email me at anna.moyer@gmail.comwith a description of the problem, a screenshot, and your browser version. Also, if you do create any recipes and would like to share them with others, email them to me as a PDF file and I will post them on a special section of the site. Below is a video tutorial explaining how to use the creator.

Growing up, reading was my escape, and it wasn’t uncommon for me to haul home fifteen books a week from my school’s collection. Librarian Blankenhorn let me break the weekly book limit, and in fourth and fifth grade, I systematically read every work of fiction in the school library. Although I read broadly, I can’t recall discovering a single book during my elementary school years that featured a character with an intellectual disability. It is natural to seek out characters to identify with, and though I was creative like Ramona, stubborn like a hobbit, and a bookworm like Matilda, I saw no examples of how to handle having a brother with Down syndrome.

Truthfully, I wasn’t fully cognizant of what I lacked until I read Of Mice and Men in the sixth grade. I could empathize with George’s fierce protection of Lennie, but I also wasn’t exactly satisfied with the portrayal of intellectual disabilities. Further, characters with physical disabilities were easier to find--Heidi, The Secret Garden, Peter Pan—but these types were spoiled at best and evil at worst. When my eighth grade book club read Riding the Bus with My Sister, I was struck by the parallels between the author’s life and my own, but it stirred in me questions that I hadn’t previously contemplated. What will happen to Sam after my parents die? Is sterilization ever appropriate for individuals with intellectual disabilities?

I have hundreds of books, which my parents begrudgingly schlep across the country each time I relocate. Accordingly, it would be misleading to suggest that I collected this particular subset of my personal library especially intentionally. It’s more accurate to maintain that my collection has developed accidentally, out of a general love for all books and a personal interest in individuals with Down syndrome and other intellectual disabilities. Many of the books were gifts, some were purchased for book clubs, and one was accidentally stolen from my high school. The collection grows because it is physically impossible for me to leave a bookstore without purchasing something, and I expect that it will continue to grow for the rest of my life.

The purpose of this collection is to line my windowsills, to weigh down my backpack, and to divert me from reality when the world seems like it’s moving too quickly for me. It reminds me of home when I miss my brother, and more importantly, it reminds me of why I devote so much energy to graduate school. I couldn’t resist earning a minor in English during my undergraduate education, and one of my long-term goals is to be a popular science writer. My lifelong love of reading has shown me how to sculpt my writing intentionally, and it has also shown me the deficit of literature portraying those with intellectual disabilities in a realistic and honorable way.​For instance, the conspicuous holes in my collection have little to do with my inability to accrue books and much to do with the fact that individuals with disabilities were hidden from the public eye for many years. Down syndrome was first described in 1866, and in the 1960s some doctors argued that the disorder may be a “modern” phenomenon because there are no obvious early descriptions in the literature. As late as the 1970s, doctors advised parents to institutionalize children born with Down syndrome and tell family and friends that the baby had died during childbirth. An early example of the representation of disability is Frankenstein. Although Frankenstein’s monster hardly has an intellectual disability in the traditional sense, he is alienated to such a degree that his very existence admonishes readers not to deviate from what is natural. The Sound and the Fury’s Benjy is given his own narrative voice, but his account is largely incoherent when taken without the rest of the work. Similarly, Charlie Gordon’s agency in Flower’s for Algernon is defined by his ability to tell his story at the peak of his intelligence, and his regression is clearly meant to be negative.

However, the normalization of individuals with intellectual disabilities correlates with an increase in positive representations of those with disabilities in literature, and there are many more recent examples of books that seek to give voice to those with neurodevelopmental disabilities by allowing them to speak for themselves. The Curious Incident of the Dog in the Night-Time’s Christopher can be interpreted as having some form of autism, but his diagnosis is never formally mentioned. Christopher’s narrative allows the audience to sample his unique mind without suggesting that his disorder is his defining feature. He is a teenager, he is a mathematician, and he is not defined solely by any disability that he may have. Marcelo in the Real World and Mockingbird do the same, and the former has the added distinction of featuring a Mexican-American son of a lawyer as the protagonist. Likewise, The Spirit Catches You and You Fall Down follows the complexities facing a Hmong refugee family with a severely disabled child. Novels like The Memory Keeper’s Daughter and Jewel are written modernly but set in the past, and offer a voice to those whose voices were silenced in previous decades. As literature featuring characters with intellectual disabilities expands, it should become evident that disability affects all ethnicities and social classes, and that it can cause both joy and grief.​The last book that I would like to point out is titled Count Us In: Growing Up with Down Syndrome. The authors, Jason Kingsley and Mitchell Levitz, have Down syndrome and were interviewed to create the book. To my knowledge, it is one of only a few books to actually take on the perspective of individuals with Down syndrome by allowing their own spontaneous thoughts to be published. They claim in their own words that their lives are fulfilling and have value. Published in 1994, this book shows how much has changed since the 1970s, when institutionalization was commonplace, and how much can still be changed to improve the lives of those with intellectual disabilities.

So without further ado, here is my list of books that feature individuals with intellectual disabilities or neurodevelopmental disorders.

I don’t remember very much about the birth of my little brother. I remember the way the light filtered onto the diamonds of the carpet as I prayed for a new sibling, spinning in wild circles and holding my older brother Seth’s hands before toppling to the ground. I remember the excitement leading up to his birth, when I knew I was going to be an older sister. And I remember my disappointment reflected in the picture window, nose to glass, expecting my parents’ arrival from the hospital.

I remember my mother’s tears, and I remember seeing my baby brother and thinking that he was perfect, although more yellow than I thought he would be. Then the mantra, “Sam has Down syndrome, which means that he has an extra chromosome. It just means that he takes longer to learn things.” After all, how do you explain trisomy 21 to a three-year-old?

​Somewhere between his birth and elementary school, Sam’s diagnosis became a part of my own identity. My job was to protect him and to teach him what I knew about the world. When my first grade teacher asked me for facts about myself, my answer was that I had a brother with Down syndrome. And when she wrote “Down’s syndrome” on the board, I told her that “Down Syndrome” was the preferred spelling.

Nevertheless, aside from tagging along to therapy appointments, I don’t have very many early memories suggesting that much was different about my brother. I think that my parents made an effort to make life as normal as possible for me and Seth. They always gave me special attention, signed me up for ballet and oboe and piano classes, built me a custom Victorian dollhouse, and allowed me more independence than I probably deserved. There were, of course, compromises. For years, certain restaurants were off-limits because Sam wouldn’t eat any of the food there. Sam was too fussy for the docent at Monticello, and our family still rarely flies because it’s difficult for Sam to get around on a plane. Though I make no claims to selflessness, I think that having a brother with Down syndrome helped me beat back some of the childish solipsism that would otherwise suggest that I was the center of my parents’ world. There was never any room for complaining, “But Sam didn’t have to do it!” Seth and I learned that fair treatment doesn’t mean equal treatment, and that our differing abilities meant that our parents had different expectations for us.

Seth became an excellent role model for how to champion those with intellectual disabilities. I knew that I valued my brother Sam, but Seth showed me how to extend that affection to those in our community. When Seth was in 6th grade, he invented his own elective to hang out with the students in the life skills classroom. I joined his elective two years after, and 10 years later, our youngest sister Grace is doing the same. For his senior project in high school, Seth self-published a photo book that follows the lives of three individuals with intellectual disabilities. And though he now works in IT, Seth’s gentleness and patience are still evident in his everyday interactions. ​

I’ve known for years that I wanted to do something to help those with disabilities, but the exact details seemed to change with my moods. At first, I thought that I would make a good physical therapist. After visiting the U.S. Holocaust Memorial Museum as a middle schooler, I was captivated by outstanding questions in medical ethics regarding the treatment of those with Down syndrome. By the time I reached high school, I was tired of my hypothetical future plans for helping those with disabilities, and decided to create Your Special Chef. Its form and features have been evolving over the last six years, but receiving emails from parents and teachers who use the resources is incredibly rewarding to me. I eventually decided that I wanted to study the biology behind Down syndrome and other neurodevelopmental disorders. I received my bachelor's and master’s degrees in biology, and I’m currently in a Ph.D. program in human genetics at the Johns Hopkins School of Medicine. Although I’m very busy with my research, I hope to continue adding recipes and resources to this site in my spare time.

​So what does it actually mean to have an extra chromosome? If you asked me when I was three, I would have told you that it meant that my brother took longer to learn things. Ask me now, and the scientist in me wants to scream how incredible it is that humans can survive with an entire extra chromosome of genetic material. Ask anyone who knows someone with Down syndrome, and they will confirm how incredible these individuals really are.​I occupy a unique position – I have a brother with Down syndrome, and I study mouse models of Down syndrome. I know what it means to have a family member with an intellectual disability, and I know how to read the scientific papers describing the biological causes. Where scientists can approach disorders as molecular puzzles, I am personally invested in the findings. I’m hoping to use this blog to explain scientific papers with relevance to neurodevelopmental disorders using common language. Also look for more articles about adaptive cooking tools and using picture recipes to teach cooking skills!